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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Feb 12 11:08am | Replies (262)Comment receiving replies
Hi i am currently having troubles. I to have pmr and gca. Started actemra infusions in oct. Was on 60 mg and got down to 10mg in april but struggled in the second week of that. Now have tingling in my head and face. Dr put me back up to 20mg, didnt work then up to 30mg didnt work and now I'm back up to 60mg right back to where i started. Still have symptoms even though I've been on this for a couple days. I am beside myself. I've been on Prednisone since last may 2022 when initial diagnosis was pmr, i didnt get gca until sept. So I'm worse off a year later. I'm not sure what happened but it seems like both the Prednisone and actemra stopped working. Now what do i do. I'm trying an anti inflammatory diet, just started drinking kefir (probiotics) as i heard that would help with inflammation and doctor said it was okay. Maybe something else is wrong but not sure. Things were going so well.
Replies to "Hi i am currently having troubles. I to have pmr and gca. Started actemra infusions in..."
I was also on 60 mg/day of Prednisone and am tapering down using weekly injections of Actemra. I am now at 20 mg/day of Prednisone. I was diagnosed with some combination of PMR and GCA on Feb 3, 2023.
My feet and hands tingle too. I think it is due to high blood sugar induced by Prednisone; this causes nerve damage in your hands and feet which induces the tingling. Diabetics also experience this when their blood sugar gets high.
Avoiding food with high glycemic indices (sugars, refined grains, and concentrated starches like potatoes) can reduce the blood sugar spikes. Also, taking a short walk (10-20 minutes) after meals significantly reduces blood sugar spikes, and hence should reduce the tingling.
Hope this helps.
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One of the reasons I believe groups like this are so important is to give people support...to let them know that first, you are on a roller coaster with an autoimmune disorder....then secondly, your body is on the same ride because of the double edge that prednisone presents. It has been three years for me with GCA on both prednisone and Actemra. The important thing is there is light at the end of the tunnel...and you are never alone on this journey as long as you are part of this support group. I could never have made it...or been an informed patient if I hadn't been part of a group in England. I just found this group today and am thrilled. I was diagnosed at one month from age 80 and I was so active. It does change your life for sure. I actually held a mental funeral for my old life, I had to stop...listen to my body and hang on for the ride. It seems things are settling...still on some pred and probably will take Actemra to my grave...but that's ok. Remember, you can and will get through this. Please, don't overdo and listen to your body....rest. My best💞